This post is extremely hard for me to write. I wish I was writing something other than what I'll be saying but since I finally said some of these words out loud for the first time this week, I'll fess up and make it more real today.
The truth is, I can not tell if biomedical treatment is working for me. I really just can't and this is unacceptable to me because we've been at it for almost a year. I know I'm not the most observant person in the world but still I have to see some change. For those of you who don't know what biomed is, please click onto the link because I am not smart enough to explain it. What I can tell you is that I had heard such great things about it, I felt like I was witnessing the beginning stages of a new medical discovery like occupational therapy for the new diagnosis of sensory processing disorder (less than 40 years ago). To me, the theory of biomedical treatment (biomed) was completely plausible and that naysayers from the medical community stating that biomed wasn't proven bla, bla, bla were probably not doing enough.
Even though, we're taking a break from biomed, I still don't believe the medical community is doing enough. Perhaps for ADHD, there is more attention but what about autism? Many biomed specialists feel that ADHD is part of the autism spectrum disorder and for me, that's not hard to believe. I think that is why it's so easy for me to befriend a mom of a child on the spectrum. If you have a child with ADHD and don't believe me, you should read Look Me In the Eye and you'll see what I mean. With autism, you can barely get one medical discipline to claim it as their own- another unacceptable situation.
Okay, getting angry here..... not productive... will stop.
Back to biomed: I tried really hard to stick to the rules. After trying a "Special Needs" Nutritionist for a couple of months, I decided to go for the gold standard and hire a DAN! doctor. He was expensive, was an actual MD, and a pediatrician too! If he can't fix this then no one can, right? I remember telling my developmental pediatrician about our move. She had already been Logan's doctor for a whole year and I was at the brink of begging her to drug my 4-year-old before the promise of biomed blew the breath of hope back into me. She wished me luck and always left the door open for us to come back.
We went back through that door this past week. We were talking about Logan's current medications and vitamins and she said the DAN! doctor should do the prescribing of medication for Logan (ADHD medication) since he was giving him other medicines as well. However, in the softest of voices, I quietly told her that I wanted her to do the prescribing of medication from now on. It was at that moment, I let myself face why I was really in her office that day. I was saying goodbye to biomed for Logan, at least temporarily.
You would think that my husband and I would have talked this over and decided together about such a change but we barely did. Both of us had invested so much in this protocol (diet, days off from work to go to the doctor, lab tests ( lots of blood ), very involved allergy testing that takes hours and multiple visits, enormous bills from the DAN! doctor, vitamins and supplements, and biggest expense of all, grocery shopping and time... time is money too). Kai and I never had the courage to even talk to each other and firmly acknowledge that biomed had not shown us much improvement but at the doctor's office, I couldn't let our reluctance to face reality get in the way of finding a better path for Logan.
For the record, our DAN! doctor is accomplished and well-known, I think perhaps even nationally within DAN! circles. From our very first meeting, even before taking any blood, he challenged us to give up everything, not just casein and gluten but also soy, corn, peanut, eggs, citrus, chocolate, peas, alcohol, and caffeine, food dye and preservatives. It was difficult but we actually managed to carry out this diet for a long time but still we saw no significant changes.
Additionally, our doctor gave us other things including the B12 shots (there's a lot more but I won't go down that lane). We saw no changes with that either. But we kept going, hoping that time would help the healing but we had to ask, how long is long enough?
I think our visit to the city the other day sort of said it all. A year ago right before we started the diet, I took Logan to a traditional allergist and spent the day similarly to the day I previously wrote about when Logan was uncontrollable. The only difference between that day last year and the one this past week was that he was one year older.
I also want to say that my DAN! doctor knows I'm taking a break from things. We aren't dropping everything and I'm still keeping him in our life, possibly just for allergies.... I don't know. We will also still steer clear from gluten and some other foods because tests and some GI reactions indicate problems in this area. We'll still keep him on those VERY expensive vitamin supplements and B12 shots but it won't go beyond that for now. If we see him worsen, that will be the sign saying that things were working and we just didn't know it!
By the way, since stimulant medications still scare me to infinity, I will never rest for the search to help Logan with alternative methods if I have some evidence that it has helped others. I'm going to try cranial osteopathy soon. I actually found someone that takes my insurance! Others call it cranial sacral therapy but the osteopaths say that they've had more training and the sacral therapists have not. I have a friend who is a professor of osteopathic medicine who assures me that it can not harm my son which was my greatest concern. I am not exactly sure how it works but I'm going to try it and see.
Believe it or not, even though I have apparently suffered major defeat with DAN!, I worked up enough nerve to tell my developmental pediatrician that I was going to try another alternative method. I can only guess what she was thinking but I will never know because she was very gracious and even told me not to try any ADHD medication while I was trying out this new treatment. I like doctors like this, don't you? She might have her own thoughts but maybe she's letting me find my own path while possibly silently acknowledging that she doesn't know everything either. The osteopath was humble too. Not once did he say he could change Logan.
On a final note, for my GFCF sisters (especially the master chefs of the GFCFrecipes Yahoogroup) out there, I want to say thank you for your guidance and support. I will still continue to seek your advice because the diet is important to us. More importantly, I want to tell you that I only wish I had the same good experiences that you are having and that I support you fully in what you are doing for your children. No matter what happens with this break that I'm taking, I will never regret trying out this tremendously difficult task. My kids eat so much healthier than they ever did and I'm proud of myself for baking the boys' bread and cupcakes. I also want to say that in defense of the GFCF (and other things F) diet, I maybe a bit blind about it because Spencer has been making a lot of progress. I attribute a lot of this to ABA therapy because as soon as he started ABA therapy, I saw a lot of changes, especially in speech but we can not say for sure that his diet and supplements didn't have anything to do with it. We'll never fully know how much it helped until we are fully able to let it all go. I don't have the audacity to do that so that is why we are not dropping everything but I am ready to take a partial break and try something new. I'll let you know how it goes.
Pictured: Mother's Day 2008. Our last gluten cake as a family was a mocha cake from a local Filipino bakery. Filipino cakes are amazing.